Betty Ford Following her Breast Cancer surgery

1974

First Lady Betty Ford in 1975 - Can you believe, we are still talking about

early detection almost 30 years later…

Breast Cancer Action 1990s

Breast Cancer Fund Obsessed Campaign

Post-Mastectomy - Betty and I make it look like fun.

BAY AREA ADVOCACY Historically

• Advocates went public with the news that the SF/Bay Area has the highest rate of breast cancer in the world.

• Advocates focused attention on environmental links to breast cancer.

• Advocates highlighted the need for more research funding and different kinds of research.

ADVOCACY AT UCSF• SPORE advocates partner with PIs and investigators

providing advice, critique, and recommendations. • SPORE advocates develop and review educational

materials for patients. • SPORE advocates review grants and trial protocol and

documentation working to support translational research.

• SPORE advocates conduct forums, retreats, and workshops.

• SPORE advocates attend national conferences and advocacy training courses.

Prevention Options…

Strategies for Women at High Risk

Life styleApproach

Chemoprevention

With few identifiable causes and a fraction of women who are genetically predisposed

(3.5% of bc cases) - what is a woman to do?

+ = ?

Task Force recommendations…

FRONT page of the NYT…

Deja Vu…

Confusion and conflict!

How to make news relevant?

IDEAS to Reach Women

1. Work to modernize necessary infrastructure to utilize technology in research and clinical settings to improve patient care - for example, ATHENA.

2. Assist in creating and disseminating information in various mediums to scientists and doctors in/outside of USCF to further learning and facilitate collaboration - work in new ways.

3. Explore tools, such as tweeting, message boards, webcasts, and podcasts, mobile aps, to create various forms of media that can be accessed by patients to be used to educate inform and empower - making information relevant.

Options for relevancy to change the status Quo

• Susan Love’s Army of Women

• Technology usage to educate/empower women– ATHENA– Web casts– Mobile aps– Tweet

Technology Opportunities

UCSF

Other Researchers

CliniciansDoctors Patients

Caregiversothers

Advocates “messengers of a

greater understanding…”

Hope Rugo

Scientists and docs today at UCSF use - Web tools such as

Web casts, internet,SharePoint and can share this

learning…

PATEINT TOUCH POINTS -Mobile symptom diary for clinical application, chat/IM, buddy finder, prevention mobile aps, podcasts,

branching decision treatment plans, Outreach - podcasts, web

sites, FAQs, email

RESEARCHER TOUCH POINTS - SKYPE, databased, podcasts, web

casts/conferences, mobile aps - tweet, FAQ, education-content, message boards, advocate support systems,

prevention outreach/communication - site meetings, conferences, PR,

publishing (does not need to be end all!)

ADVOCATES MAY ASSIST• Help to design infrastructure and

patient points of contact• Facilitate and take part in town

hall, webcasts/sharepoint collaborative tools

• Create content - publish and social media opportunities

•PR

Mobile Breast Health Apps

Mobile App

Mobile App

Breast Cancer Awareness Month

A breast cancer “awareness” stunt in South Africa

awareness with real action = prevention